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New Mom with CML newly diagnosed.


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#21 Rissa

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Posted 03 February 2012 - 09:13 PM

Good thing it was just water!  :-). My son spilled apple juice on the couch a couple weeks ago.  Do they ever stop spilling?



#22 SharaT

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Posted 03 February 2012 - 09:25 PM

Thank you so much for posting this! You seem like you have a great personality! I even read this to my mom since she's also in the dark. People are already asking to be my bone morrow downer LOL! People make me laugh! 

I wasn't told much about CmL just here you have it and here's medicine and have a good day! Needless to say I'm going to another doctor and at MD Anderson.  They did a fish test on me and I don't have the results yet. I kinda wonder how he figured I have CmL? My WBC was 22000 and 6momtha ago was normal! I am confused with that as well!  The onocologist said that I have lukemia cells in my blood. That out of 300 90% were lukemia.  Not sure what that all means either.  I don't even know what my JAK2 test came back as.  He seemed rushed and uncomfortable to even talk about it.  I was in a zone and just cried and didn't know what to say.  My husband was t any help either all he heard was cancer.

So needless to say I am a bit in the dark!!

Blessings :)



#23 CallMeLucky

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Posted 03 February 2012 - 10:50 PM

The "90% leukemia cells out of 300" sounds like the results of the FISH test, which would be typical.  there are other things in the CBC that can also point to CML such as Basophil count.  Don't worry too much about those details at this point.  Go to MD Anderson, they are pretty much the best and will get you squared away.  The beginning is the hardest, it will get easier.

Try to sleep well, as impossible as that is right now.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#24 Trey

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Posted 03 February 2012 - 10:56 PM

Many of us have been on these drugs for years,  We do not have three eyes or several ears as a result.  We live mostly normal lives.  We will live for decades.  So will you.

http://community.lls.org/thread/2600

http://community.lls...ttype[document]



#25 SharaT

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Posted 03 February 2012 - 10:56 PM

He said he hadn't done a FISH test on me yet and did it that day. My basophil count was normal.  ONLY thing abnormal was my neutrophils, monocytes and RDW. I also had an LDH of 263 normal for me is 192.  I don't know much else to be honest. I had a million questions for him and then he gave me that, and I went blank...



#26 SharaT

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Posted 03 February 2012 - 11:17 PM

Trey that made me laugh good to know I won't look like a monster after this is over!



#27 Dina36

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Posted 04 February 2012 - 12:03 AM

Hi there my organic buddy,

Sorry that you had to join us here but I'm glad that you did, this is a place where you will find lots of great and helpful information.,

I said my organic buddy because I was (and still am) like you, an organic person who took a very good care of myself and still ended up getting CML.

Now, after six months I really believe that we were just unlucky to get it, but also very lucky to get a disease that is very treatable today whereas only a decade ago

was almost always fatal. I know this is a very difficult time for you and your family right now, but it will get better by time, in just a few months from now you will be sitting here

and writing to another newly diagnosed person that he/she will be just fine.

If all that organic and healthy food didn't save us from getting CML at least we don't have diabetes or hypertension, so on a top of TKI's we would have to take some more drugs.

Dina



#28 Guest_billronm_*

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Posted 04 February 2012 - 12:12 AM

Dear Shara,

   You sound just like me at my dx. And I'm much older than you. I have had cml for over 4 years. Taking that first pill was so scary. I probably had the phone in my hand and had already dialed 91 and as soon as I swallowed it I was ready to dial the last 1. I really don't remember. I was in full panic mode. I hate taking meds.Right now take your med for your children. Because it will give you a long life and you will see your children grow up and probably grandchildren also. At first you may have some side effects from the gleevac, mostly gi issues diahrrea,nausea. Some people have no trouble at all. If the Gleevac doesn't agree with you there are 2 other meds out there and a new one coming out soon. Please just take it a day at a time right now. This is the one cancer that is controllable and a cure for us is very close. I am not going anywhere, I have 2 beautiful grandsons and I plan on picking out their brides for them they are 7 and 9! Do you think I'm jumping the gun a bit?

  Please stay with us on our site. No topic is out of bounds we have all been through that the big D,nausea,hemmoroids. And so many helpful suggestions from everybody. Or if you really get pissed off with all this crap just get on here and vent. Basically once our bodies adjust to the meds our biggest complaint is fatigue. And if it's at all possible have your husband go to your oncologist appts. with you. My husband goes with me,because he's retired. And it helps him understand this disease. And right now I'm sure you're husband is terrified ,and by going with you it will calm him down.  Just remember you will be fine unless you step in front of a bus. We'd love to see a post of your beautiful children when you;re doing better.  Sincerely Billie



#29 Tedsey

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Posted 04 February 2012 - 12:12 AM

OK, I was a vegetarian.  Read extensively about health and nutrition.  I ate organic food.  I never took any medicine, even for a headache (like you).  Never had health problems.  Exercised.  Took care of my mental health.  Was totally into preventative medicine and went to an internist who specialized in it.  Well, got cancer anyway. 

I think it scared a lot of people in my life because I had the most healthy lifestyle.  I did whatever I could to ward off cancer and other diseases.  My internist actually called and apologized to me.   No one thought it would ever happen to me.  Well, it is a fallacy that what you eat or don't eat, what medicines you take or don't take, herbs, whatever, will keep you from getting cancer.  OK, myth dispelled.

I don't mean to sound harsh.  I can understand what you are going through.  I had a baby and a little toddler when I was diagnosed.  I didn't know if I should start planning for my funeral or what.  I was crazy depressed and terrified.  I think I didn't sleep for over half a year (not exaggerating).  I was worried about who would be a mother figure for my infant girl since I didn't have a mother to care for me (and neither did my mother ironically).  It was like some cruel legacy.  I thought of my poor husband being left to rear two little kids on his own.  It was the worst nightmare of my life.

But that was over two years ago and I am still alive and planning to go back to school.  I even talk about retirement with my husband!  I never thought I would ever be able to do that!  It is much less scary now.  And I think there is a good chance most of us will grow old and die with this disease instead of dying from it.

I wish there was some way I could say something to make this better for you.  But I am here to listen.  I know what it is like to be a wife and mother of young children and have your whole world blown to smithereens overnight.  Like you, I also walked into a yearly physical from the Twilight Zone.  I felt fine.  From what I understand, there are no herbs that can control or cure cancer.  Our medication is a miracle.  You can put your trust in it. 

Please take care.  Write whenever you need.

Tedsey

P.S.  We were also trying for a 3rd baby when I was diagnosed.  Although my husband and I are very lucky to have any children at all, it has taken me a while to mourn over the baby that never will be.  It still makes me sad and I cannot quite give up on the dream, but I am coming to terms with it. 



#30 Tedsey

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Posted 04 February 2012 - 12:38 AM

Totally LOL!  "Careful talking to people about your illness, very few will understand.  Right now they think you are going to die, after a while they will wonder why you are still around and before you know it they'll be telling you how lucky you are and it really is no big deal.  You will have mixed feelings about these people - lol."

I think that is what most people are thinking about me right now or they think I am cured.  But no one dares to ask.  I kinda like the power it gives me.  I stopped feeling responsible for teaching everyone about CML and my on-going treatment. 

At a birthday party the other day, my cousin was telling me her cat died.  She told me he had cancer and pointed in my direction (like me!).  She also mentioned that he was taking a chemo pill (also like me!), but he didn't take it well (unlike me).   Moreover, she went on to tell me, that I was very leggy for a person my size.  First ,I am compared to a cat with cancer, then, I am given a complimentary insult.  I decided it was not worth the effort to thank or correct her.  I just chalk her up to one that will never get it, (and in more ways than one). 

I plan on outliving my crazy extended family out of spite.



#31 AmyH

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Posted 04 February 2012 - 02:42 AM

I know exactly how you feel.  I was in the hospital for 5 days after my diagnosis to get some blood and fluids and my kids would come to visit me and I would just cry.    It was so hard.    I'm very active too and a stay at home mom for the most part ( I work part time at my church w/the children's ministry.) but CML will not hold you down.  I still go, go, go and I didn't realize how sick I was before!  Now that my blood is all back to normal I have so much energy!  I'm so thankful for that. 

It's still hard sometimes, but it does get easier.   Once you see the medicine working, talk to others who have CML and are living with it and have been living w/it for years, and doing some research and learning all the lingo...then it will get easier.  I promise. 

I had my BMB the day of my diagnosis on January 5th.  My oncologist told me he was 95% sure I had CML and then proceeded w/the BMB.  Did you not have yours yet?  They drugged me and I really didn't feel it.  It was kind of like being at the dentist - I knew they were doing stuff, but it wasn't painful.  Just a lot of pressure. 

No one wants to leave their family.  I had to remember that my life before CML wasn't promised to me.  I could die next week in a car accident.  You can't live like that or you will go crazy.  I still plan on being around for my grandchildren one day! 



#32 AmyH

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Posted 04 February 2012 - 02:45 AM

"Careful talking to people about your illness, very few will understand.  Right now they think you are going to die, after a while they will wonder why you are still around and before you know it they'll be telling you how lucky you are and it really is no big deal.  You will have mixed feelings about these people - lol."

HAHAHA!  That is so true!



#33 AmyH

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Posted 04 February 2012 - 02:47 AM

Have you ever thought about adoption Tedsey?  I always wanted to adopt, but I wonder now if I would be able to w/my diagnosis? 



#34 Rissa

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Posted 04 February 2012 - 11:28 AM

Lucky hit the nail on the head with that one.  And Tedsey, that story about your cousin cracked me up!



#35 scuba

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Posted 04 February 2012 - 01:01 PM

Hi Shara - I also live in Houston and go to M.D. Anderson. I will be curious what drug they start you on - Gleevec, Sprycel, Tasigna or something different. Do you know which doctor you are going to see? Whoever it is you'll be in good hands. M.D. Anderson is one of the top places in the country for CML (as well as other cancers).

Read Trey's blog: http://treyscml.blogspot.com/

to get a good foundation and background to the disease. His blog has a lot of excellent references to put you at ease. CML has had significant breakthroughs in recent years  that have rendered the disease more chronic than fatal. You will live a normal life. As Dr. Cortes told me, "You will die of something else - not CML". The key is getting past the early stages when you have to get your blood system back to normal. That can take up to a year or more. M.D. Anderson will probably put you on aggressive treatment to get your chromosome (Ph+) counts down quickly. So get started, learn as much as you can and go have babies. You'll be fine.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#36 Lori's okay

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Posted 04 February 2012 - 04:51 PM

Hi Shara,

Welcome!  So sorry you are having this experience but you've found a good place to get info and support.  I love that we have fact people who are very knowledgeable and many who are very good at being kind and supportive!

I am about 2 months into treatment.  I too was so concerned about taking these meds.  I avoid as many meds as I possibly can and like things natural.  But, here we are.  And, I'm becoming more and more grateful for these medications even though they may (or may not) be tough to take.  You may or may not have side effects, and if you do have them at first, they may lessen in a few months. 

It is great that you live so close to MD Anderson.  I live outside Washington, DC, and have a couple of good centers nearby.  MD Anderson is at the forefront in research on CML, you're in great hands!

As things stand now, I will plan to take these meds the rest of my life.  BUT.  I have to say that I harbor a hope that all the research being done will actually come up with a complete cure so that these won't be necessary.  That really could happen in the next decade or so.  Then I plan to go pack to purely natural!!  But not till there are solid cures!!

Keep posting.  I'm sending loving thoughts your way!  You'll see those sweet children grow up!!  And this will all be lots better in the coming weeks!

Lori


DX 09-2011 PCR 8.08 not IS WBC 17 , Began Tasigna 600mg  

in 2012 Tasigna 450mg/day ,in 2013-2017 Tasigna 300mg/day

DATE/PCR

09-11/ 8.08 not IS

03-12/ 0.054 not IS

06-12/ 0.035 not IS

09-12/ PCRU, 01-13/ PCRU

4-13/ 0.042 IS

7-13/ 0.014 IS

11-13/ PCRU, 04-14/ PCRU

8-14/ 0.006 IS

PCRU: 12-14/ 05-15/ 10-15/ 02-16/ 

09-16/ 02-17/ 09-17/ 

10-17 tapered off 

11-3-17 Stopped Tasigna

1-15-18 still PCRU

 


#37 SharaT

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Posted 04 February 2012 - 07:59 PM

Seriously, than you for all of your suportive comments! It has really helped me in a lot of ways!  May God give us all peace and strength since only HE is the ultimate healer!

Question: Did any of you get a dx just from blood test? The onocl I saw was a bit to "business" for me.  All he said is you have CmL and if you dot take this pill you will die in 3years!  I havent even done a BMB yet!  Are they suppose to dx with out that?

I have a friend that was missdx with some cancer and then had a bmb and had CLL. 

Just thought I would ask.  Have a blessed evening!



#38 Tedsey

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Posted 04 February 2012 - 11:04 PM

Dear AmyH,

Yes!!  I'm adopted and have always wanted to adopt.  I was just thinking of another because it is cheaper.  Anyway, I missed my chance. The state or private agencies won't let people with cancer adopt.  But my husband has already agreed to foster care in the future when the kids get older.  The state may let me do that.

Teds



#39 Tedsey

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Posted 04 February 2012 - 11:06 PM

Yes, only a blood test, but they wanted to confirm with a bmb and pcr. 



#40 SharaT

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Posted 04 February 2012 - 11:18 PM

What was you're CBC? Just 6months ago mine was normal!! I went to the doc for life insurance!!




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